In 2018,  NORD (National Organization for Rare Disorders) adopted a set of operating practices to ensure that its member organizations maintain ethical standards and integrity from industry and other influences. Their qualifications require members to have proof of tax-exempt status, bylaws, a Conflict of Interest Policy for both Board and Staff, an annual Operating Budget, programs that involve research, education, a website that fully reflects your mission and your diverse patient voices, a Privacy Policy, a Board that must meet at least twice annually and a Medical Advisory Board. The Member must disclose how donations are used.  We have met all their requirements and have been awarded their Platinum Seal of Excellence.

GuideStar is the world’s largest source in information about nonprofit organizations. It serves to verify that a recipient organization is established and that donated funds go where the donor intended for individuals looking to give. In 2013 GuideStar implemented three seals based on the information a nonprofit provides in its profile: Bronze, Silver and Gold. In 2016, a new seal that allowed nonprofits to share progress and results for their mission, GuideStar Platinum, was introduced. Seals need to be earned in order, starting with Bronze and working the way up to Platinum. In Platinum, one metric must be from the previous year, showing success from the prior year.

In 2021, we attained the GuideStar Platinum Seal of Transparency based on our metrics monitored from 2020 and 2019. Please go to our website and click on our GuideStar Transparency icon to learn more about us.


Contact Us

Contact Us

(281) 713-2962
800 Rockmead Drive, Suite 155
Kingwood, TX 77339
[email protected]

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